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Emigration: I’m prescribed cannabis for ADHD but can’t travel home to Ireland

In the final part of our series Cannabis Health editor, Caroline Barry shares her own story.

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ADHD: An Irish passport lies on top of a blue European document. Both passports are ontop of a map where a pen is marking the route

In the final part of our series Cannabis Health editor, Caroline Barry shares her own story. As an Irish person using cannabis for ADHD in the UK, Caroline can’t travel home with her medication.

For weeks I have been covering the stories of Irish people who are emigrating or who have emigrated for better access to cannabis. This has covered multiple different experiences from those tired of living with prohibition, patients unable to afford their medication to those unable to travel home with cannabis without breaking the law. It also touched on lost business and taxes for Ireland.

I never thought I would be part of the story but here we are.

ADHD: A woman with neon green hair looks away from the camera. She is wearing a white shirt with a black tie.

My name is Caroline and I’m the editor of Cannabis Health. I’m also a medical cannabis patient currently being treated for ADHD.

I was diagnosed with ADHD at the age of ten after it became very apparent I had an excessive amount of energy. Not only that but I was incredibly difficult in school as I would either concentrate intently to the point of forgetting to move or not at all. A common misconception is that ADHD people can’t concentrate when it’s actually that we can’t balance it.

My schoolwork was a mess of inattentive mistakes if I even did it at all. I was too busy getting my energy out by singing, running, chatting or distracting the other children in the class. I also had oppositional defiant disorder so telling me what to do was a sure way to start a fight. ADHD people often have comorbidity with other conditions such as autism or anxiety.

ADHD and growing up in rural Ireland

I grew up in rural Ireland where there was a lot of fields or coastline to go running or walking on, but not a lot of support in terms of healthcare. I got very used to being described as trouble, a handful or the naughty child because my brain worked differently. Experts estimated that ADHD children hear on average 20,000 more pieces criticism before they reach the age of 10.

This was my reason for not seeking healthcare. While I took a cocktail of medications as a child, I stopped as a teenager because they didn’t appear to do anything. I shut down by not telling anyone I had the condition for fear of being treated differently. I struggled through my degree, my masters then through half of my PhD studies before I left as I wasn’t able to handle it.

I compensated by filling my days with events or fun activities. If there was a night out, cinema trip or dinner out to be had then I was there. ADHD people have lower levels of dopamine than neurotypical people do so we spend a lot of time looking for short bursts of it. Anything we find fun or new can help us to top that up.

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I eventually emigrated from Ireland in 2012 for economical reasons. The country was on its knees after a recession, a housing crash and series of financial scandals. Jobs were scarce, the money was dismal and it became increasingly apparent that there wasn’t going to be a job at the end of my MA degree. So I left along with 54,000 other Irish people that year. The worst year of emigration on record for Ireland.

ADHD: A woman with blue shoulder length hair faces the camera wearing a black t-shirt with lettering on it. She is sitting in a corn field

Neurodiversity and COVID times

There are studies to be done yet on how the pandemic affected those of us who are neurodiverse. In my case, it heightened my hyper-focus causing me to break down with stress and exhaustion at Christmas. My hyper-focus overrides my ability to switch off at the end of the day. While someone may recognise 5 pm as clocking-off time, I can’t and will often work until midnight if I can.

I needed medication to help ease this.

I also needed help getting to sleep. In non-covid times, I would head to the gym to burn off the excess energy I had stored up from sitting down at a desk all day. When everything closed, I had nowhere to go so I just stayed at home. This led to a lack of sleep where I would go days without proper rest.

I was exhausted and burned out.

NHS help

I eventually tried to access more pharmaceutical methods of treating my ADHD in desperation. My GP referred me to the ADHD support services in Nottingham and I had my first assessment call with them.

It’s extremely nerve-racking going to a new doctor when you have a condition that isn’t immediately visible. I worry that I’m not going to be taken seriously and you are at the mercy of someone’s interpretation of your condition. I cried down the phone asking for help because I couldn’t deal with it anymore. I have lost jobs, partners, friends and my life has been shaped by having ADHD. So when the doctor said he didn’t feel my ADHD was bad enough for medication, I felt mortified and was close to giving up. I’ve gone years managing it myself so why bother to look now?

I appealed but it’s now over six months later and I am still waiting to hear anything back from them about treatment.

Cannabis was a huge part of my life already. I had been writing about it for so many years that I was amazed I hadn’t thought about it before now. In researching a story, I noticed that clinics offered medical cannabis for ADHD.

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The more I thought about it, the more it made sense. Cannabis helps to quieten the racing thoughts and excessive energy that fuels my hyper-focus and keeps me awake at night. There hasn’t been a lot of studies of cannabis on ADHD and those that exist tend to be recent.

A study from 2020 on CBN showed potentially promising results. It took adults with ADHD and a medical cannabis prescription. They were asked to record their symptoms, sleep and anxiety pattern using questionnaires. One group of the 59 participants were given a higher dose and recorded less medication use. Those on the lower doses reported less anxiety.

Life-changing medication

The assessment from a private medical cannabis clinic was life-changing. Not only did the doctor listen to everything I had to say but there was no judgement. I felt able to talk about some of the darker parts of my ADHD that I hadn’t felt comfortable speaking to the NHS doctor about.

To get to this stage, I had to get every last bit of information from various GPs that had treated me over the years. This may sound easy but I had moved country three times living in Ireland, Italy and the UK. Not only that but the psychiatrist who diagnosed me had passed away in 2020, as well as my childhood doctor retiring.

The relief of being told I could have medical cannabis was immense. I had been sourcing it where I could prior to that which meant I had no idea what I had or when I would have it. I rationed the small amounts I could get and never knew what was working or not working.

ADHD: A white woman with short pastel pink hair wears blue headphones around her neck with a leopard print scarf

Medication

My cannabis arrived at my front door in a small white tub from Rokshaw. For someone who had never held a prescription for it before, it felt surreal to hold a white tub with a pharmaceutical label on it that was filled with cannabis.

I’m still learning to use it properly by getting the perfect vape and a routine that works. I have only had it for a few weeks so there is time to learn all of this yet. Also, ADHD people can be forgetful about their medication so I have to be mindful that I have something in the house that can help me to relax and sleep.

I no longer worry about rationing and can have as much as I actually need. I also know what is in my medicine, instead of trusting strangers to be upfront about it.

I started to write the series on emigration after realising that I knew a lot of Irish people who had left or were in the process of leaving to get access. A lot of them were in pain and really needed better access to their medication which Ireland wasn’t providing for them.

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Writing about emigration as an emigrated person, made me realise that I have another issue now. I always wanted to move home after a while but to do so means I lose out in two ways.

Firstly, my job as a cannabis writer does not exist in Ireland. I’ve spent ages accumulating this information, researching and understanding how this industry works. The media industry in Ireland is incredibly difficult to get into as not only a woman but a queer female who is not from Dublin but from West Cork. There are no cannabis publications in existence over there or regular reporting on the industry in the broadsheets.

Secondly, my cannabis prescription is not valid in Ireland. I would need a prescription from an Irish GP which is going to be impossible to get. If someone with chronic pain from cancer cannot get an affordable prescription or a person with fibromyalgia can’t get one at all, then I don’t fancy my chances. This is why people are leaving.

I cannot travel home to my country without risking arrest or having my medication taken off me. One choice is to leave my medication at home which I can do, but my symptoms will come back. Another is to take the risk and see what happens. The final choice is access once I land which means going back to the flourishing black market in Ireland and taking my chances.

I’ve reached out to Frank Feighan and Minister for Health Stephen Donnelly. I’ve sent them my articles on emigration to no response. I outlined my problem on returning home. Mr Feighan is the Minister of State for Public Health, Well Being and National Drugs Strategy. He responded with a cut and paste response that I could have found on the internet with a quick Google that basically said nothing in relation to my case. Since that response, I’ve had nothing back. Stephen Donnelly has never replied.

I won’t risk it. My family are too important for me to never visit Ireland again and it’s my home. There is a deep sadness in knowing you won’t be able to move home until this is fixed but an even bigger one in knowing, it’s not likely to be any time soon.

I would like to say thank you to Aoife, Adrienne, Alicia and Joe who all spoke to me as part of the series. 

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Scottish MPs back medical cannabis patient following police action

Medical cannabis patient Liam Lewis and his husband are “overwhelmed” by the support they have received.

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Medical cannabis patient
Lerwick police, on the isle of Shetland, seized Liam's medication from his local delivery office.

A Shetland MP has voiced his support for a medical cannabis patient who had his prescription seized by police.

MP for Orkney and Shetland Isles, Alistair Carmichael, has described what happened to medical cannabis patient Liam Lewis as “disproportionate” after Lerwick police seized his medication from his local delivery office on Saturday 22 January.

The 28-year-old, who suffers from functional neurological disorder, has been prescribed medical cannabis for chronic migraines from Sapphire Medical Clinic for two years.

Liam attended the police station later that day with documents and medical notes from the clinic and asked if he could present a copy of his prescription when the clinic reopened on Monday.

medical cannabis patient Liam Lewis and husband

Medical cannabis patient, Liam Lewis and husband Edward

However, officers apparently believed that the documents were fake and issued him with an official warning which will become part of his criminal record.

Liam is now facing up to three months without his medication.

Mr Carmichael, Lib Dem, and MSP Beatrice Wishart are now said to be preparing to make representations to Police Scotland.

Speaking to the Shetland News, Mr Carmichael said: “This is a massively unsatisfactory situation for Mr Lewis or anyone else to be relying on medicinal cannabis which is now legally available in the UK.

“If Mr Lewis had a prescription, as I understand to be the case, then surely he could have been allowed time to produce that for the police officers.”

He added: “Beatrice [Wishart] and I will be making representations to Police Scotland – there is a public policy issue here about them apparently denying access to medicine.

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“There may be some technical reason why the medicine should not have been distributed in this way, in which case that needs to be dealt with.

“In the meantime, this will count as a criminal record, it will stay on his [Liam Lewis] criminal record, and to my mind this is disproportionate.”

Liam and his husband Edward told Cannabis Health that police officers had been in touch following the incident, after his story appeared in the Scottish press.

The couple are calling for a Government-funded identification card to be issued to patients who hold legal prescriptions to avoid them facing law enforcement. 

Edward said: “We are overwhelmed by the support that this issue is getting. The more traction this gets the better, as we want to make sure that others do not find themselves in this situation.”

He added: “I thank Alastair Carmichael for his support and we hope this goes a long way, not just to solve the immediate problem, but also the wider social issues behind this.”

In a statement to Cannabis Health on Wednesday 26 January, a spokesperson for Police Scotland said: “A 28-year-old man was issued with a recorded police warning following the seizure of a controlled substance which had been found by officers within a sorting office in Lerwick on Saturday 22 January.

“He was unable to provide satisfactory evidence to police that the substance had been prescribed legitimately by a medical professional and when the recorded police warning was given to him he accepted it.

“Officers will continue to engage with him as we try to establish the full circumstances of the situation.”

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A spokesperson from Sapphire Medical Clinic, commented: “We are unable to comment on individual cases due to patient confidentiality. However, it’s important to highlight that medical cannabis was legalised for prescription in November 2018 across the UK.  As the only medical cannabis clinic registered by Healthcare Improvement Scotland, we abide by stringent regulations which include assessment by a specialist doctor and the requirement that prescriptions are dispensed by an approved and licensed pharmacy.”

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Boris Johnson faces fresh questions on NHS access to medical cannabis

In the midst of the Number 10 party scandal, the Prime Minister faced questions about NHS access to medical cannabis.

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Prime Minister Boris Johnson, 10 Downing Street in London, medical cannabis

In the midst of the Number 10 party scandal, the Prime Minister faced more questions about when patients would see NHS access to medical cannabis.

Conservative MP Mike Penning, who has been a prominent advocate for medical cannabis access, raised the issue again during Prime Minister’s Questions today (Wednesday 26 January).

Speaking in the House of Commons, Mr Penning, MP for Hemel Hempstead, said: “Many children in this country are suffering from a special form of seizure… which medical cannabis prescribed by a consultant actually helps them live. Only two children in this country get that free on the NHS, the rest are having to beg, borrow and scrape to try and get that prescription issued by a consultant, paid for.”

He added: “I know the secretary of state has the political will, but please push this forward so these children live.”

Karen Gray, whose son Murray has been seizure free for two years on medical cannabis, told the Edinburgh Evening News this month that she was feeling “optimistic” following a “positive” meeting between her MP, Lib Dem Christine Jardine and the Health Secretary, Sajid Javid.

Ms Jardine said her meeting with Mr Javid on Monday had been “much more positive” than her previous contacts with ministers on the issue.

She said: “He is looking for a way to break the logjam to allow the medical profession to feel confident in offering NHS prescriptions for patients with conditions like severe epilepsy.”

Responding in  Parliament, the Prime Minister said he was also “keen to support it” –  before going on to place the responsibility with the MHRA.

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“We’ve already changed the law for doctors to prescribe cannabis products where clinically appropriate,” said Mr Johnson.

“And I’m very keen to support it, provided the MHRA is happy as well.”

Cannabis has been legal for medical purposes in the UK since 2018, but still only three patients are able to access it on the NHS.

The rest are forced to pay up to £1,200 a month for a private prescription.

Charity Medcan Support reached out to the Prime Minister on Twitter following the broadcast.

The organisation, which supports families of children with epilepsy, said: “@BorisJohnson changing the law isn’t enough – we hope to see you at Parliament to hear and meet these families whose children are benefitting at huge costs.”

It might not be the answer many are looking for, but with most political focus on what really happened behind closed doors at Number 10 in the spring of 2020, it’s promising to see some MPs have the will to keep the conversation going.

Irish medical cannabis campaigner, Vera Twomey, pointed out on Twitter: “So happy to see Sir Mike Penning making representation on behalf of UK patients seeking access to medical cannabis. In such turbulent political times it’s great to see the issue raised.”

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Medical cannabis patient ‘distraught’ after medication seized by police

Liam Lewis is “distraught” as he faces three months without his cannabis medication.

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Liam Lewis (left) and his husband Edward Douglas are appealing the decision.

 

A Scottish medical cannabis patient who had his prescription seized by police says he is experiencing a “mental and physical health crisis”.

Liam Lewis, who lives in Lerwick on the island of Shetland, says he is “distraught” as he faces three months without his cannabis medication.

The 29-year-old suffers from functional neurological disorder, which causes severe migraines, which he says left him “bedbound” before medical cannabis treatment.

Liam has been prescribed cannabis through Sapphire Medical Clinics for two years, but on Saturday 22 January, his prescription was seized by police after it arrived at his local delivery office via Royal Mail. 

Liam and his husband say they attended the police station later that day with documents and medical notes from the clinic, and as his prescription had recently been changed, asked if they could present a copy this when the clinic reopened on Monday.

However, officers apparently believed that the documents were fake and threatened to bring charges against Liam.

He was issued with a written police warning on Sunday 23 January.

“Nothing like this has ever happened before,” Liam’s husband and registered carer, Edward Douglas, told Cannabis Health.

“The package arrived on the island on Friday [21 January] but the police dogs were at the delivery office on Saturday morning and the medication was seized. It was only when Liam went to track the package that we saw it had been taken by Police Scotland.

Edward continued: “The sergeant said that people are now coming up with sophisticated ways of sending cannabis and that the evidence we had wasn’t proof enough that it was a legal prescription.

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“We showed him clinical letters and the Sapphire patient portal where the prescriptions are logged, but he said that all of it could be made up. He even said to Liam ‘we know that you are just after drugs’.”

Liam is now in the process of appealing the decision, but says the police warning means that he will be unable to legally access cannabis-based medicines for another three months.

“Before I started using medical cannabis I was practically bed bound and was sick all the time,” said Liam.

“I was agitated and just genuinely dissociated from my body, I was like an observer in my life. Cannabis actually gave me my sense of purpose, because I was able to live again.”

Liam is no longer prescribed cocodamol by his GP – due to the fact that the cannabis was working – so is now left without any pain medication and only anti-sickness tablets to manage his condition. 

“I’m in a mental health and physical health crisis,” he said.

“I feel distraught and I don’t want to go back to feeling completely disassociated from my life again.”

Edward and Liam have 28 days to appeal the decision and plan to approach the Scottish Government’s cross-party group on medical cannabis to urge them to lobby for a state-issued identity card to protect patients from this situation.

“I can be Liam’s voice when he’s too unwell to fight for himself, but there’s people out there who might not have someone who can advocate for them,” added Edward.

“They might be too scared to continue this treatment and that’s who we want to stand up for.”

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A Police Scotland spokesperson said: “A 28-year-old man was issued with a recorded police warning following the seizure of a controlled substance which had been found by officers within a sorting office in Lerwick on Saturday 22 January.

“He was unable to provide satisfactory evidence to police that the substance had been prescribed legitimately by a medical professional and when the recorded police warning was given to him he accepted it.

“Officers will continue to engage with him as we try to establish the full circumstances of the situation.”

Advice for patients

Medical cannabis patients are advised to keep any medication in its original packaging and to have a copy of their prescription to hand, should they be approached by law enforcement.

Abby Hughes, chair of patient advocacy group PLEA (Patient-Led Engagement for Access), said: “Unfortunately some law enforcement officers may not be aware that cannabis medicines are legally available to be prescribed in the UK.

“If meaningful documentation showing legal possession of cannabis is not able to be immediately demonstrated, it is lawful that your medication may be seized. Once sufficient documentation has been provided however, patients are entitled to have cannabis medicines returned.

“If you face any setbacks or are disbelieved even after demonstrating lawful authority, continue to present any thoughts in a calm and structured way. Ask for time to be given to explain that you hold a valid prescription for medical cannabis, and for them to familiarise themselves with the 2018 rescheduling of cannabis-based products for medicinal use in humans, as well as the guidance issued to clinicians by NHS England.”

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A spokesperson from Sapphire Medical Clinic commented: “We are unable to comment on individual cases due to patient confidentiality. However, it’s important to highlight that medical cannabis was legalised for prescription in November 2018 across the UK.  As the only medical cannabis clinic registered by Healthcare Improvement Scotland, we abide by stringent regulations which include assessment by a specialist doctor and the requirement that prescriptions are dispensed by an approved and licensed pharmacy.”

Patients can contact PLEA for support on hello@pleacommunity.org.uk

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